Year: 2017

This article was originally published in The Public Discourse on December 19, 2017

Six Things You Need to Know about Physician-Assisted Suicide

byNancy Valko, RN ALNC

Pull quote: Is the real healthcare crisis not enough physician assisted suicide laws? Or is it the staggering and increasing number of people losing their battles with mental illness and committing suicide?

It has been twenty years since Oregon’s physician-assisted suicide law took
effect after a public referendum. Since then, four other states have
legalized physician-assisted suicide.

Polls seem to show strong public support for physician-assisted suicide. They ask questions like this one from a 2017 Gallup poll: “When a person has a disease that cannot be cured and is living in severe pain, do you think doctors should or should
not be allowed by law to assist the patient to commit suicide if the patient
requests it?”

Unfortunately, most people have only a vague idea about what such laws
actually say and do. Here are six things you must know before you decide
whether to support or oppose physician-assisted suicide.

1. Pain or any other suffering is not a requirement for a person seeking assisted suicide; “a disease that cannot be cured” can include manageable conditions like diabetes as well as terminal illnesses like cancer.

None of the US laws are restricted to patients experiencing pain, which can
be addressed in ways that do not deliberately kill the patient. In 2016, for
example, almost half of patientsusing assisted suicidein Oregon cited their reason for seeking death as “Burden on family, friends/caregivers” while just 35 percent cited “Inadequate pain control or concern about it.”

2. Medical professionals participating in physician-assisted suicide are immune from accountability and standards of due care.

“No person shall be subject to civil or criminal liability or professional
disciplinary action for participating in good faith compliance with”
Oregon’s law. Thus any licensed doctor (or other healthcare provider), with
or without experience and regardless of his or her medical specialty, can
write a lethal overdose prescription for a patient as long as he or she
claims to be in “good faith compliance.” As a legal standard, this test is
effectively meaningless, because it relies only on the physician’s word.

The physician is not required to be-and often is not-the patient’s primary
care doctor. Many physicians do not want to be involved in this process,
according to “Compassion & Choices,” an organization that promotes the legalization of physician-assisted suicide throughout the United States. When one doctor (or many) conclude that it would be irresponsible to give a lethal overdose to a patient, such
organizations encourage patients to find a doctor with lower standards.

No other medical intervention has such immunity protection from lawsuits or
criminal investigation. In addition, no other medical intervention is so
devoid of standards for the clinical expertise or education required of the
physician involved.

3. Physician-assisted suicide does not involve the stringent documentation and oversight required for other medical interventions.

In all jurisdictions where physician-assisted suicide is allowed, to
prescribe a lethal overdose the doctor need only fill out the required state
forms that include a consultation with a second physician who agrees.
Neither doctor is required to have a professional relationship with the
patient before the physician-assisted suicide request.

Documentation of physician-assisted suicides relies on doctors’
self-reporting. There is no requirement that the actual taking of the lethal
overdose be witnessed by a medical professional or anyone else. This means
that there is no safeguard against medical complications, coercion by family
members, or other problems.

TheOregon lawalso specifies that, “Except as otherwise required by law, the information collected shall not be a public record and my not be made available for inspection by the public”, after which the original forms are destroyed.

Unfortunately, the immunity protections and secrecy surrounding even the minimal self-reporting in state-level assisted-suicide laws eliminate the possibility of future potential lawsuits or prosecutions for abuse. They keep alive the myth that there are strong safeguards in the law that eliminate problems like coercion or elder abuse.

4. The cause of death must be falsified.

States with physician-assisted suicide laws requirethat the cause of death is reported as death from an underlying condition rather than the lethal overdose, supposedly to ensure the patient’s privacy. But this clearly violates the standards set for coroners
and medical examiners by the Centers for Disease Control. Those standards require accuracy in determination of death because “The death certificate is the source for
State and national mortality and is used to determine which medical conditions receive research and development funding, to set public health goals, and to measure health status at local, State, national, and international levels.”

Falsified death certificates also quietly function to smooth over any problems with life insurance policies that have suicide clauses denying death benefits if the insured commits suicide within two years of taking out a policy. And since doctors are only requiredto “recommend that the patient notify next of kin” about the plan for assisted suicide, the rest of the patient’s family may never know the real cause of death. This means that they are also deprived of the chance to reassure their loved ones of their
support and willingness to help take care of them until their natural death.

The usual standards forcaring for a suicidal person include intensive management to prevent suicide attempts. These are changed in physician-assisted suicide: “If, in the opinion of the attending physician or the consulting physician, a patient may be suffering from a psychiatric or psychological disorder or depression causing impaired judgment, either physician shall refer the patient for counseling.” Only the evaluation of a patient’s competence, not the diagnosable mental disorders that afflict more than 90 percent of people who die by suicide, is required . It is shocking that only 3.8 percent of those seeking physician-assisted suicide in Oregon were referred for psychiatric
evaluation in 2016. Patients with dementia and with clinical depression that had existed for years before they contracted a physical illness have died under the Oregon law.

6. Suicide is contagious.

A 2015 article in the Southern Medical Journal titled “How Does Legalization of Physician-Assisted Suicide Affect Rates of Suicide?” studied Oregon’s and Washington’s rates of non-assisted suicide after assisted suicide laws were passed. Despite claims that assisted suicide laws would reduce other suicides or only substitute for them, the authors reached the disturbing conclusion that “Rather, the introduction of PAS (physician assisted suicide) seemingly induces more self-inflicted deaths than it inhibits.”

This does not surprise me. In 2009 my thirty-year-old, physically healthy daughter Marie died by suicide. She killed herself using a technique she learned after visiting assisted suicide/suicide websites and reading Final Exit (1991) by Derek Humphry, founder of the Hemlock Society (an organization that merged with another group to form Compassion & Choices). The medical examiner called her suicide “textbook Final Exit.”

Adding to our family’s pain, at least two people close to Marie became suicidal not long after her suicide. Luckily, they were saved, but suicide contagion, better known as “copycat suicide,” is a well-documented phenomenon. Often media coverage or publicity around one death can encourage other vulnerable people to commit suicide.

According to the Centers for Disease Control and Prevention, suicide rates have been
increasing since 2000 after decades of decline. Suicide is now the tenth leading cause of death in the United States, with more than 44,000 people dying by suicide every year. Suicide costs society over $56 billion a year in combined medical- and work-loss costs, not to mention the enormous toll suicide takes on family and friends. Oregon’s suicide rate is more than 40 percent higher than the national average.

Is the real healthcare crisis not enough physician-assisted suicide laws? Or is it the staggering and increasing number of people losing their battles with mental illness and committing suicide?

No matter what Compassion & Choices says, physician-assisted suicide is not a civil right or just one of an assortment of morally neutral end-of-life options. It’s time to stand up and fight to keep the medical profession from abandoning its most fundamental ethical principles.

Nancy Valko, RN, ALNC, is a longtime writer and speaker on medical ethics issues who recently retired from critical care nursing to devote more time to consulting and volunteer work. She is also a spokesperson for the National Association of Pro-Life Nurses.

[Non-text portions of this message have been removed]

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When I first started out as a nurse in the late 1960s, I saw several patients admitted to determine why they had “mental status changes”, such as confusion. One of my first duties on admission was to make a list of medications the patient was taking.

I was alarmed to find some of these patients, usually elderly, were taking a large number of medications and some were similar and/or had potential interactions with other medications. When I first brought this to the attention of a doctor, he was skeptical until he read one of the patients’ lists.

The result was that he reevaluated every medication and temporarily stopped all medications that were not crucial. When the patient rapidly improved and went home with a much reduced list of medications, he and I shared this with other doctors and many other such patients then rapidly improved.

“At least 15 percent of seniors seeking care annually from doctors or hospitals have suffered a medication problem; in half of these cases, the problem is believed to be potentially preventable. Studies have linked polypharmacy (multiple medications) to unnecessary death. Older patients, who have greater difficulty metabolizing medicines, are more likely to suffer dizziness, confusion and falls. And the side effects of drugs are frequently misinterpreted as a new problem, triggering more prescriptions, a process known as a prescribing cascade.

The glide path to overuse can be gradual: A patient taking a drug to lower blood pressure develops swollen ankles, so a doctor prescribes a diuretic. The diuretic causes a potassium deficiency, resulting in a medicine to treat low potassium. But that triggers nausea, which is treated with another drug, which causes confusion, which in turn is treated with more medication.

For many patients, problems arise when they are discharged from the hospital on a host of new medications, layered on top of old ones.” (Emphasis added)

Some doctors are now trying to combat the problem through education about “deprescribing” — systematically discontinuing medicines that are inappropriate, duplicative or unnecessary.

I saw this problem recently in my own family when one of my older but still vigorous relatives in remission from cancer suddenly started to deteriorate. At first, her daughter thought the cancer had come back but the tests were negative.

The mystery was solved when it was discovered that my relative’s ophthalmologist (eye doctor) changed her eye drops for glaucoma but, unfortunately, the new medication also contained some of the same drug she was using for her heart condition. When the medications were adjusted, my relative was back to normal within a short time.

MY RECOMMENDATIONS FOR MEDICATION USE AT ANY AGE

1. Keep an updated list of all medications you take-including supplements like vitamins and over the counter medications-with you or a family member. Make sure all of your doctors have this list.

2. Especially if you take several prescription medications, don’t be afraid to ask your doctor if you still need all your current medications. With pain medication, especially narcotics, ask about how long you should use them and if or when you should start using over the counter pain medicine instead.

3. Ask about all your medications’ intended purpose and side effects so you can recognize a potential problem.

5. Feel free to ask the pharmacist questions about your medications, even after you have already filled and started the prescription. They are there to help and medication is their specialty. You can even ask them how to safely dispose of older or narcotic medications you no longer need. Personally, I use a pharmacy that is open 24 hours a day.

Obviously, the neutrality of the medical association was a big factor in getting the first physician-assisted suicide law passed in the U.S. as well as its eventual integration into Oregon’s health care system.

“Massachusetts’ ‘neutral engagement’ position is even better than a simply neutral position,” said Rebecca Thoman, M.D., campaign manager for Doctors for Dignity for Compassion & Choices. “It means if Massachusetts enacts a medical aid-in-dying law, the medical society will offer education and guidance to physicians who want to incorporate medical aid in dying into their practices.” (Emphasis added)

“The vote before the Massachusetts Medical Society was whether to approve a survey — just a survey — of members’ attitudes toward “medical aid in dying.” …

In the end, the policy-making body decisively endorsed the survey and approved $25,000 to fund it — a sign that the Massachusetts Medical Society may be reconsidering its historic rejection of what it has called “physician-assisted suicide.’’ It comes as this movement to give terminally ill patients an option to end their life at a time of their choosing isgaining traction, propelled in part by some physicians’ groups dropping their longstanding opposition. (Emphasis added)

The surveys were ultimately sent to 25,000 doctors but only 12 to 13 percent were returned. Of those returned, approximately 60 percent of respondents wanted the medical society to rescind its opposition to physician-assisted suicide, while 40 percent wanted to keep the policy.

The most fundamental medical ethic of not killing or helping patients kill themselves must not be reduced to a popularity contest.

If this radical change in medical ethics results in the Massachusetts legislature legalizing physician-assisted suicide or by yet another voter referendum, the Compassion and Choices agenda to legalize assisted suicide throughout the U.S. will continue to accelerate to the detriment of the health care system, ethical health care providers and all medically vulnerable people.

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Two disturbing news items in the UK recently caught my eye. Both involved actions considered criminal in the past, but now reconsidered as acts of love. Unfortunately, we have had similar cases here in the US.

In a November 17, 2017 UK Telegraph article, a 59 year old chemist named Bipin Desai, admitted pouring morphine into his father’s fruit smoothie and then injecting the diabetic father with insulin. The judge directed the jury to find Mr. Desai not guilty of murder but rather of assisted suicide.

The judge told Mr. Desai that:

“Your acts of assistance were acts of pure compassion and mercy. Your father had a solid and firm wish to die. For him, being assisted to die would be fulfilling his wish of going to heaven to see his wife and being put out of his misery.”

Ironically, the father was not even terminally ill but rather “he had just had enough of life and there are no real authorities who deal with that situation.” (Emphasis added)

Mr. Desai was allowed to go free with a suspended nine month prison sentence for assisting his father’s suicide and told by the judge:

“You are free to now go with your family and start the process of rebuilding your life.”

Omodele Meadows of the UK was given $12 million dollars for the “wrongful birth” of her now 6 year old son Adejuwon.

Four years before she became pregnant, Ms. Meadows had a test to see if she had the gene linked to hemophilia because a relative had a child with the condition. Ms. Meadow’s test mistakenly showed that she did not have the gene.

After her son was born and found to have both hemophilia and autism (a condition that has no prenatal test, at least for now), she sued the doctor who gave her the results. Ms Meadows claimed that if she knew she had the gene for hemophilia, she would have had her son prenatally tested and aborted him.

The judge wrote:

“It cannot be easy for any mother to contend bluntly that her child should not have been born. ‘Her love for her son shone through from her written statements. ‘She had specifically sought to avoid bringing a child with hemophilia into the world, knowing the suffering that condition causes.” (Emphasis added)

Did anyone wonder what Baby Adejuwon will think if or when he finds out about the circumstances of his mother’s case?

CONCLUSION

Before the legalization of abortion and euthanasia, we had consensus that killing a person because he or she was ill or disabled was absolutely wrong and unjust.

Now we are urged to accept that killing can be a loving act and should not be criminalized. And, if a diagnostic mistake is made and an abortion avoided, parents who would have aborted should be compensated, even richly.

What does that tell people who are ill or who have disabilities as well as all of us who lovingly care for these people? What does this do to our laws, ideals and attitudes?

In our hearts, we all really know that caring for lives, not killing, is the right thing to do. When we insist on ignoring this truth, tragedies like these two cases will not only continue but also devolve into terrible social, medical and legal policies that will affect us all if we do not speak out now.

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This fall, an expectant mother from a small town in Missouri found out that her son had spina bifida, a condition where the spinal column does not close all the way during the baby’s development. This can cause a range of serious, even life-threatening problems such as nerve damage, paralysis and fluid buildup around the brain.

In the past, babies with this condition were operated on soon after birth but in the last few years, intrauterine (inside the womb) surgery was developed to treat the baby before birth to get the best possible outcome for the baby. In an October 23, 2017 New York Times article about one such surgery, the doctors claimed that the optimal time for this surgery is 24 to 26 weeks.

Although many women tragically abort their babies with spina bifida, this brave expectant mother wanted for this surgery for her son. The surgery was scheduled at a large medical center in St. Louis.

Hearing about this, a call was put out to the St. Louis pro-life community to help this mom. One person donated an apartment near the medical center for her before the surgery because she was on bed rest and afterwards for recovery. Many people made meals and helped in other ways.

Mother and baby are now doing well and we are all praying for an uneventful final weeks of pregnancy and a safe delivery.

Especially at Thanksgiving, we give thanks for the blessings we enjoy. Perhaps we should also give thanks that we have such wonderful, selfless people like those in this story!

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Although physician-assisted suicide is consistently portrayed in major media as just a matter of taking some pills and peacefully going to sleep and die, a November 9, 2017 article titled “When Dying Becomes Unaffordable” in Medscape (a free subscription resource for medical professionals) describes a very different and alarming scenario.

This article by Roxanne Nelson, RN BSN is primarily about outrage over pharmaceutical companies drastically raising the price for secobarbital, the most commonly used sedative drug dosage prescribed for physician-assisted suicide, from less than $200 to $3000 or higher. However, the article also reveals little-known problems with the oral overdoses themselves, the ironic connection with capital punishment, the rise of lethal injections in other countries and the expected increase in the assisted suicide business.

PROBLEMS WITH ORAL OVERDOSES

Physician-assisted suicide laws are silent on the actual drugs and dosages prescribed but taking the lethal overdose is not an easy matter, according to this article.

For the most commonly used drug secobarbital, a person has “to dismantle 100 capsules to obtain powder to mix into a lethal brew, a process that takes about 1 person-hour of effort“, “generally mixed with juice of a sweet substance to mask the bitter taste” and “consumed at one time”. (Emphasis added) And, although unmentioned in the article, Oregon’s 2016 data summary on their physician-assisted suicide law reported that the minutes between ingesting the drugs prescribed and death ranged from 7 minutes to 9 hours. But even this related to documentation received on only 25 patients out of the 133 patients taking the overdose last year. The other 108 patients are listed as “information unknown” about the time between overdose and death.

According to the article, the second most commonly used sedative drug oral pentobarbital became unavailable in 2015, in part due to “the uncanny and uncomfortable parallel between executions and PAD (‘physician-assisted dying’, more accurately known as physician-assisted suicide)”. The intravenous form of this drug is used in lethal injection executions and the growing opposition to capital punishment along with limited therapeutic uses may have resulted in oral pentobarbital products “voluntarily withdrawn or discontinued by the manufacturers” and no longer available in the US.

According to the article, physicians in Washington have tried two cheaper and available assisted suicide “cocktails” (the article’s term) containing overdoses of two cardiac drugs, morphine and a sedative after finding that just an alcohol and sleeping pills combination made patients complain of a “burning sensation”.

The first lethal “cocktail” trial called DDMP resulted in 20% of patients taking longer than 4 hours to die but a stronger “cocktail” called DDMP2 is now said to kill the majority of patients within 2 hours.

So far the new lethal “cocktail has been given to about 60 patients and, with 10 more cases, the doctors intend to submit an article on their findings.

LETHAL INJECTION ASSISTED SUICIDE

Ms. Nelson also writes positively about other countries like Canada, Belgium, Luxembourg, and the Netherlands that use lethal injections to allow “more leeway and options as to the selection of drugs, cost, and mode of delivery.”

And, at least in Ontario, patients prefer the injection:

“For example, in Ontario, Canada ― a country where patients have a choice ― there have been very few cases of self-administration, less than 1%, according to James Downar, MD, CM, MHSc, a critical care and palliative care physician at the University Health Network in Toronto.”

And

“There is a strong desire to avoid the oral route here, given the failure rate,” (All emphasis added)

“NUMBERS ARE SMALL BUT SLATED TO GROW”

In this chilling final section of the article, Ms. Nelson predicts that with the recent passage of California’s physician-assisted suicide law in 2015 and more states considering such laws, “the number of individuals choosing this option will be significantly higher.”

And she concludes with this ominous prediction:

“As more laws are passed across the United States, the need for an effective and affordable medication or drug combination becomes increasingly imperative. Even if covered by insurance, artificially inflated drug costs place a burden on the healthcare system and on society in general, so a safe and inexpensive option would benefit everyone.

Currently, unless the generic and widely available drugs used in DDMP2 fall victim to price gouging or some other unforeseen issue, it appears that a viable option has become available.” (Emphasis added)

CONCLUSION

People, sick or healthy, have been dying by self-inflicted suicide since time began but we never encouraged or approved it until the last 25 years. Having medical professionals involved does not make suicide better.

We don’t solve problems by helping people kill themselves and if we don’t reject physician-assisted suicide, we will inevitably find ourselves-like Canada and other countries-expanding to lethal injections and other groups of people who are judged “better off dead”.

“I knew that the people who requested it didn’t want to end their life. They loved life but realized they had an incurable, terminal disease and didn’t want to suffer needlessly as the inevitable end of life approached.

The proof is that more than one-third of terminally ill Oregonians who obtain the medication never take it, but they get great comfort in knowing they have access to it if they need it, which helps them suffer less.” (Emphasis added)

Is this really the crucial argument to upend our medical and legal ethics to legalize physician-assisted suicide?

Especially when more than 33% of people approved for assisted suicide don’t use the lethal overdose prescriptions, this should be a wake-up call for assisted suicide activists as well as suicide prevention groups and the rest of society.

As a former oncology (cancer) and hospice nurse who cared for many terminally ill patients including relatives over decades, I encouraged my patients and family members to talk about all their concerns. I found very few who wanted to end their lives out of fear of future suffering. I reassured my patients and relatives that we would make them as comfortable as possible and support them until their natural death. Not one died by suicide and all died with true dignity.

But this was before physician-assisted suicide began to be legalized, glamorized and promoted by activists, especially through sympathetic media outlets.

WHERE IS THE FOLLOW UP ON THE PATIENTS WHO DON’T TAKE THE LETHAL OVERDOSE?

What happened to these patients who decided not to take the lethal overdose? Did they unexpectedly improve or find their symptoms adequately treated? Was the terminal diagnosis wrong? Did they find the physical, emotional and spiritual support to continue living?

Unfortunately, those writing state assisted suicide reports are apparently not interested in this important information that could help save other lives.

WHAT HAPPENS TO THE UNUSED LETHAL OVERDOSE?

Another concern is what happens to the lethal overdose that the patient does not take?

In any home health situation, every unused dose of a controlled medication must be accounted for and disposed of carefully. We know how important it is to keep such medication out of a child’s reach or from misuse by a family member or friend. Keeping overdoses for possible future ingestion is obviously dangerous, especially when our nation is in the middle of an opioid crisis that now kills almost 100 Americans every day.

“Anyone who chooses not to ingest a prescribed dose or anyone in possession of any portion of the unused dose must dispose of the dose in a legal manner as determined by the federal Drug Enforcement Agency or their state laws, if any.”

CONCLUSION

When even assisted suicide supporters admit data suggests that the “distress prompting patients to request these lethal medications primarily stems from their fear over losing control at the end of life” but claim that the more than 33% who don’t take the prescribed lethal overdose should still have it to supposedly “get great comfort in knowing they have access to it if they need it”, physician-assisted suicide is further exposed as a terrible response to human fear and despair.

Organs from these patients are taken when families agree to stop the ventilator and allow doctors to take the person to an operating room where the patient’s organs are removed when (or if) the patient’s heartbeat and breathing stops for 2-5 minutes within a 1-2 hour time frame. If the patient does not die within the time frame, the transplant is cancelled because the organs are potentially damaged and the patient is then returned to a room to die without further treatment.

At first, there was some criticism of DCD on legal, medical and ethical grounds, especially after a 1997 segment of the TV show “60 Minutes” exposed the case of a young gunshot victim whose organs were taken by DCD but the medical examiner who conducted the autopsy said he believed the injury was survivable.

In 2016, UNOS (United Network for Organ Sharing), the organization that manages the nation’s organ transplant system under contract with the federal government, issued its decision on Imminent Death Donation, a policy that would take DCD a step farther to become virtual organ donor euthanasia.

Because “a substantial minority” of DCD donors fail to die fast enough in the 1-2 hour time frame for organ donation, UNOS was considering re-framing the issue as “the recovery of a living donor organ immediately prior to an impending and planned withdrawal of ventilator support expected to result in the patient’s death” to ensure better quality organs and avoid an unsuccessful procedure. (Emphasis added)

Not only would this language change DCD donors from dead donors to living donors, but this also effectively destroys the definition of Dead Donor Rule that states:

“The dead donor rule is an ethical norm that has been formulated in at least two ways: (1) organ donors must be dead before procurement of organs begins; (2) organ procurement itself must not cause the death of the donor. (Emphasis in original)

Although living organ donation can be ethical when a healthy person freely decides to donate an organ like one kidney to someone who has lost kidney function, this imminent death donation is entirely different because the donor’s organ is taken before a planned and expected death.

“Respect for autonomy requires that people be given choices in the circumstances of their dying, including donating organs. Nonmaleficence requires protecting patients from harm. Accordingly, patients should be permitted to donate vital organs except in circumstances in which doing so would harm them; and they would not be harmed when their death was imminent owing to a decision to stop life support. That patients be dead before their organs are recovered is not a foundational ethical requirement.” (Emphasis added)

Although UNOS ultimately decided to shelve last year’s proposal to approve Imminent Death Donation “because of its potential risks at this time, due to a lack of community support and substantial challenges to implementation”, that decision may only be temporary:

Thanks to the disability advocacy group Not Dead Yet (NDY), I was recently alerted to this new proposed organ donation policy change and read UNOS’ public comment proposal that describes such patients as having “a progressive, incurable, chronic disease that is fatal and will ultimately be terminal” and gives examples like Alzheimer’s and Multiple Sclerosis.

In its statement opposing the policy change, NDY points out:

“Yet the Committee seems to want to create a special subgroup of living donors to whom the normal rules governing living donations do not apply and whose deaths are of less concern than the deaths of other donors because these living donors are presumably anticipated to die soon anyway. The recommendations would promote overt and lethal discrimination between donors based on disability and perceived health status…

One example of the Committee’s biased double standard is while OPTN policy is not to accept persons as living donors if they show evidence of suicidality, it urges an exception for people with certain fatal diseases so as not to preclude people with plans for assisted suicide (where legal) from first undergoing a living organ donation. (pg. 10) …Surely, public confidence in the organ procurement system will not be enhanced by any policy proposal that hints toward a future in which organ euthanasia is accepted and promoted.” (Emphasis added)

CONCLUSION

Unfortunately, the short time frame for public comments on this new policy is now closed and UNOS apparently does not send out alerts to the general public. Also, to the detriment of the public, the media tends to publicize feel-good stories about donation rather than explore controversial policies.

But I do not have an organ donor card nor encourage others to sign one because I believe that standard organ donor cards give too little information for truly informed consent. Instead, my family knows that I am willing to donate tissues like corneas that can be ethically donated after natural death and will only agree to that donation.

The bottom line is that what we don’t know-or allowed to know-can indeed hurt us, especially when it comes to organ donation. We need to demand transparency and information before such policies are quietly implemented.

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This week, I was called to see a beautiful 2 month old baby boy I will call “Joseph” who was brought by his grandmother, mother and father to one of my city’s children’s hospitals from a small town hours away.

Joseph was born with a rare genetic condition called Trisomy 13 and needed medical care for a problem. As a nurse who has been active in medical issues involving people with disabilities since having my daughter Karen who had Down Syndrome, I was asked to help the parents oversee Joseph’s care.

Baby Joseph was doing well until an unexpected problem developed and despite heroic efforts to save him, he died early Friday morning. It was so heartbreaking for his family and the rest of us but their love for Joseph was inspiring and they said they were blessed to have had him.

So instead of my usual blog, I would like to reprint an article I was asked to write for Voices magazine in 2012 in honor of baby Joseph and his wonderful family.

On October 18, 2012, we lost our 6-year-old grandson Noah after a long and often brutal battle with a rare autoimmune disease called familial HLH (Hemophagocytic lymphohistiocytosis). Less than two months later, on December 14, 2012, twenty children around our Noah’s age — along with other victims — were viciously gunned down at Sandy Hook Elementary School by a disturbed young gunman. While the Sandy Hook tragedy affected the whole country and Noah’s death affected a smaller group of family and friends, I kept hearing the same question: Where is God or does He even exist?

The answer is that God is where He always has been when we grieve and suffer: with us and even carrying us through the roughest times, as the famous “Footprints in the Sand”poem depicts. But what does that really mean?

Almost forty four years ago, I witnessed my first death of a child as a student nurse. Thirty years ago, my baby daughter Karen who had Down Syndrome died from complications of pneumonia. Three years ago, my oldest daughter Marie died by suicide. And now, there are Noah and the Sandy Hook victims. Personally and professionally as a nurse, I have also been with countless parents and others who have lost loved ones. I would like to share what I discovered as my personal “survival guide” for coping with grief as a Catholic woman. It consists of three decisions I made years ago.

I Choose to Live

All death is hard because it involves loss, but the death of a child seems especially cruel no matter whether the death resulted from violence, accident, or illness. No parent expects to outlive their child. When the supposed “natural order” of life and death is breached, it shakes all of us to the core even when the child is not our own. Especially in today’s secular world, even people of faith can feel lost and helpless.

When a child dies, shock, denial, and even alcohol and drugs can cushion the crushing grief for a while but eventually reality sets in. It is hard to even consider facing years and years of living without that precious person. Life is totally disrupted and even the routine of being at a hospital or bedside feels like a loss. In my case when I lost my daughters, I had to remind myself that my husband, children, and others needed me, but at times even that thought seemed totally overwhelming rather than motivating.

Recently Cesar Millan, the famous “dog whisperer” talkedabout his suicide attempt after a number of losses and how he learned to cope with bereavement from his experience with dogs. When dogs grieve, he recommends three things: exercise, discipline, and affection. He said he found this also helped him.

Looking back, I found that these three techniques had helped me. Exercise decreased my anxiety and pain. Discipline meant appreciating even the most mundane routines of life or work and embracing the distraction. Hugging my loved ones and friends gave me a renewed sense of connection with the world and even with God.

However, I know that life will still contain many challenges. For example, while Noah’s 2 1/2-year-old brother Eli is free of HLH, we recently discovered that Noah’s unborn baby brother Liam, who is due in April, does have the disease and will also need a bone marrow transplant. We pray that he will achieve the cure that eluded Noah but we face the future with our confidence in God intact. I will never be a cockeyed optimist but I do know that storms can be weathered and that we can be better rather than bitter as a result. (2017: Liam is now a happy, healthy 4 year old,)

I Choose to Be Happy

This is perhaps the hardest decision that I or any other bereaved parent has made but it is crucial. Years ago I was with a young mother who tragically lost her 2-year-old son. We spoke almost daily for a long time. Finally, she told me that she couldn’t see ever getting past her grief. I asked her if she had laughed yet. Embarrassed, she said she was watching a TV comedy show the night before and realized that she thought she heard a sound resembling a laugh come out of her. I told her that any laughter was the beginning of healing. I reassured her that she would laugh again and have moments of pleasure more and more in the future and that she should celebrate those moments rather than feel guilty. Life may never be “normal” in the old sense but life still had the potential to be good, perhaps even great.

From other bereaved parents who helped me, I learned that you don’t have to hold onto the grief to hold onto the love you feel for your child. That beloved child would not want your life to be blighted by his or her death any more than you would want your children to be forever sad after your death. And, in our rich Catholic tradition, we honor Jesus’ mother Mary as Our Mother of Perpetual Help, not Our Mother of Perpetual Mourning.

I now look at working toward happiness and fostering a generally cheerful outlook as a tribute to my daughters and grandson. This doesn’t mean that I am immune from being blindsided by grief and longing when I accidentally hear certain songs, see another person their age, witness another death, etc. Like probably everyone else I still have what my husband kindly refers to as my “moments” when life seems like a long, hard slog. But I continuously strive to foster an attitude of gratitude for what — and especially who — I have left. I don’t want the children’s legacy to be one where their deaths destroyed a family.

There is no set timeline for grief and bereaved parents and other relatives need to be patient with themselves and those around them. I remember the old days in medicine when grieving relatives were immediately offered a tranquilizer. I knew even then that this often just delayed the process instead of helped. There is no “good” or “bad” way of grieving. Everyone has their unique journey although it is not a sign of weakness to ask for or offer professional help when necessary.

I was surprised by the depth of grief I felt for the Sandy Hook victims and their relatives. I found it excruciating to watch the relentless TV coverage of the tragedy but I also found it hard to turn away. However, in watching the story unfold, I was struck by the fact that although I have spoken with many other bereaved parents over the last three decades, I never met a parent who said they wished their beloved child had never been born rather than to have faced the grief the parent endured. Obviously, you can never lose when you truly love and I was so glad that the Sandy Hook parents were surrounded by loving, supportive people in their community and countless other caring people throughout the country who wanted to help.

Pain is an inescapable part of the grief journey, but we may hope that we all can eventually get to the point where it is the life, not the death, of our beloved child that is the most important to us.

I Choose Not to Reject God

I’ll never forget reading about a famous and outwardly successful man who said he gave up on the idea of God when his little sister died. This gentleman wound up with a series of failed marriages and despite his millions of dollars, is bitter and unhappy.

There is no question that faith is often challenged when tragedies like the death of a child happen. But rejecting God means rejecting the greatest source of love and healing that we so desperately need at our worst times.

I eventually realized that I never did and never will have total control over my or anyone else’s life and that this is tolerable because God has a Divine Plan. I’ll never forget the wonderful Visitation nuns who taught us that life is like a tapestry that is large, beautiful, and intricate. However, on this earth we see the tapestry only from the back. We see dark colors, chaos, and loose threads that seem to go nowhere. Nothing in the tapestry appears to make sense, much less beauty. It is only when we die that God turns the tapestry around and we can finally see the amazing result. God doesn’t cause tragedies but rather brings good out of the evil we see.

It was when my Karen was born that I discovered that God is communicating with us all the time. It was then that I started noticing what I call the “miracles of grace” that God seems to send at some of our most heart-searing times. Over the years there have been some great ones: The depressed friend intent on suicide who was saved at the last moment by a smile from Karen. The young person who came back to the Church when Marie died. The many people who have volunteered to become bone marrow donors in honor of Noah and to help others like his little brother Liam.

The big miracles of grace also taught me to look for and appreciate the smaller mercies that comforted me and let me know that God is there: The woman who told me that baby Karen had done more good in her short life than most 80 year-olds. Visits from Marie’s friends who told me wonderful stories about her that I never knew before. Great friends who seemed to call at exactly the right moment when Noah was so sick.

When I was a little girl, I was often irritated by my mother’s admonitions to “offer it up for the poor souls in Purgatory” when I was hurting either physically or emotionally. It took years for me to understand that offering up my pain for such souls or any other good intention for others often acted as a kind of pain reliever and, at the same time, made my pain meaningful in a good way. I also learned that even little acts of kindness performed in memory of a loved one were a great form of honor and gratitude for those lives that are still joined to us in God’s community of love.

Today, I would ask those of you who read this to consider offering up a frustrating situation or performing some small act of kindness in honor of Noah, Karen, Marie, and the Sandy Hook victims.

Those children are now in God’s Hands. The world is still in ours and we can make it better.

Like this:

In August, I wrote a blog “Physician-assisted Suicide and the Palliative Care Physician” about Dr. Jessica Nutik Zitter, a palliative care doctor in California who approved of physician-assisted suicide, would want it for herself but had still had serious some qualms about actually writing for the lethal overdose herself.

In the end, Dr. Zitter decides that assisted suicide can be rendered “safe” by being rare and practiced by specially trained medical practitioners as “just one tool in the toolbox of caring for the dying-a tool of last resort.”

Thus, Dr. Zitter, perhaps unknowingly, gives support to the Compassion and Choices goal of “normalizing” and “integrating” physician-assisted suicide into standard medical practice. Note their own description of their activities:

“We help clients with advance directives, local service referrals and pain and symptom management. We offer information on self-determined dying when appropriate and provide emotional support through a difficult time. We employ educational training programs, media outreach and online and print publications to change healthcare practice, inform policy-makers, influence public opinion and empower individuals. Compassion & Choices devotes itself to creative legal and legislative initiatives to secure comprehensive and compassionate options at the end of life.” (Emphasis added)

Now in her new article “De-Medicalizing Death”, Dr. Zitter is excited about a new University of California, Los Angeles (UCLA) Health Centers’ program where “only” 25% of patients went on to commit physician-assisted suicide after an “intake process…conducted by trained psychotherapists (psychologists and clinical social workers) instead of physicians”.

Also, the UCLA new intake process for physician-assisted suicide that so excites Dr. Zitter paradoxically undermines the common media depiction of a terminally ill person in unbearable pain desperate for immediate relief:

“The intake consisted of an extensive set of questionnaires designed to assess all possible sources of distress. Any patient with physical or psychiatric needs was referred on to the appropriate services. But as the UCLA committee expected, most of what patients needed was to discuss their feelings about their approaching death and process their grief and sense of loss. This mirrors data from the entire state of California as well as Oregon, which suggest that the distress prompting patients to request these lethal medications primarily stems from their fear over losing control at the end of life. It is not, as many may think, due primarily to physical suffering.” (Emphasis added)

And

“Anne Coscarelli, psychologist and founding director of the Simms/Mann–UCLA Center for Integrative Oncology, described the conversations that came from this intake process as revelatory and comforting for the patients. Several patients ultimately completed legacy projects, such as video or written messages and stories, for their children and grandchildren. This invitation to talk, which opens up a discussion that most of us are taught to avoid, turned out to be a game-changer”. (Emphasis added)

And, I would add, this “game-changer” ultimately resulted in most patients NOT dying by assisted suicide.

As a former hospice and oncology nurse, this kind of listening and support is very familiar to me. We gave our patients such care along with symptom control and our patients died with real dignity with their families supported as well.

Personally, I was never even once tempted to help end any of my patients’ lives.

CONCLUSION

Dr. Zitter is like many people. The idea of controlling one’s own death or avoiding watching a loved one slowly die is very seductive. But, as Dr. Zitter has unwittingly discovered, suicide is the loneliest kind of death and very amenable to intervention.

On the other hand, the legalization and approval of physician-assisted suicide reinforces the underlying despair that leads even many healthy people to think death is the solution to their problems.